Archive
Cystic Fibrosis Trust
UK-based Cystic Fibrosis Trust is "the charity uniting people to stop cystic fibrosis". They provide information and support relating to being physically well, mental well, and being fulfilled. The "Life with CF" section on their website includes the Award-winning pre-school and primary school pack, as well as information and resources to support people through every life stage. Read More
Read MoreSiblings Australia
Siblings Australia provides support for siblings of children and adults with disability. They provide information, resources and stories focusing on sibling experiences, roles and practical support. They provide peer support services for siblings and one-on-one support for parents and siblings. They also provide professional education and accreditation. (Note, content is general in nature, not specifically focused on CF). Read More
Read MoreParenting a child with CF
This CFNZ webpage provides information and tips for parents of a child with CF. IT also includes a link to the SKIP website and app, which provides valuable resources for parenting children under age 5, including deal with behaviours that most parents find stressful. Read More
Read MoreCystic Fibrosis New Zealand (CFNZ)
CFNZ is the peak consumer body for people living with CF in New Zealand. They focus on support, research, funding, and advocacy. CFNZ manages the national CF data registry and leads the national research strategy. They have useful information about CF and living with CF, including supporting a family with CF, parenting a child with CF, family planning, CF at school and work, and travelling with CF. Read More
Read MoreCystic Fibrosis Australia (CFA)
CFA is the peak consumer body for people living with CF in Australia. They focus on collaborative programmes, research, funding, partnerships and advocacy. CFA encourages cohesion amongst the state and territory bodies, manages the national CF data registry, leads the national research program, conducts a biennial CF conference and supports the quality improvement program. They have useful information about CF, living with CF, and mental health on their website as well as links to CF-Donut (information about CF and comorbidities) and Consumer Connect. Read More
Read MoreCystic Fibrosis Queensland (CFQLD)
CFQLD is the peak body for all people living with CF in Queensland. CFQLD provides support services, advocacy, education, research funding and practical support. They host a range of information and resources on their website about CF and living with CF as well as links to CF Smart (education program) and CFStrong (information for young adults and adults living with CF). Read More
Read MoreCystic Fibrosis Community Care (CFCC)
CFCC promotes awareness of CF and provides support, advocacy and information to the CF community across NSW and VIC. They also fund medical research. CFCC provide direct services and have a range of information and resources on their website about CF and living with CF. They also have specific websites for parents of a newly diagnosed child with CF (see CF Baby Steps: http://www.cysticfibrosisbabysteps.org.au/) and for young people and adults living with CF (see CFStrong: https://cfstrong.org.au/). Read More
Read MoreCystic Fibrosis Foundation (CFF)
Cystic Fibrosis Foundation is a US-based organisation that offers a variety of information about CF and managing CF, health and wellness, nutrition, family life, travel, treatment and care. Their rich community blog offers stories from a wide range of people living with CF. Bear in mind the content is written for a US audience - especially around insurance and treatment costs. Read More
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